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Given the substantial improvements in cancer screening and cancer treatment in the United States, millions of adult cancer survivors live for years following their initial cancer diagnosis and treatment. However, latent side effects can occur and some symptoms can be alleviated or managed effectively via changes in lifestyle behaviors.
The purpose of this study was to test the effectiveness of a six-week Web-based multiple health behavior change program for adult survivors.
Participants (n=352) were recruited from oncology clinics, a tumor registry, as well as through online mechanisms, such as Facebook and the Association of Cancer Online Resources (ACOR). Cancer survivors were eligible if they had completed their primary cancer treatment from 4 weeks to 5 years before enrollment. Participants were randomly assigned to the Web-based program or a delayed-treatment control condition.
In total, 303 survivors completed the follow-up survey (six months after completion of the baseline survey) and participants in the Web-based intervention condition had significantly greater reductions in insomnia and greater increases in minutes per week of vigorous exercise and stretching compared to controls. There were no significant changes in fruit and vegetable consumption or other outcomes.
The Web-based intervention impacted insomnia and exercise; however, a majority of the sample met or exceeded national recommendations for health behaviors and were not suffering from depression or fatigue at baseline. Thus, the survivors were very healthy and well-adjusted upon entry and their ability to make substantial health behavior changes may have been limited. Future work is discussed, with emphasis placed on ways in which Web-based interventions can be more specifically analyzed for benefit, such as in regard to social networking.
Clinicaltrials.gov NCT00962494; http://www.clinicaltrials.gov/ct2/show/NCT00962494 (Archived by WebCite at http://www.webcitation.org/6NIv8Dc6Q).
In the United States, there are currently more than 12 million people who have survived cancer [
Having good social support has been linked to better health outcomes and quality of life in cancer survivors [
Since more than 83% of adults aged 50-64 and 56% of adults aged 65 and over have access to high-speed Internet connections via computers, laptops, and smartphones [
Recent Web-based interventions designed to change health behaviors vary substantially in terms of their design, online features, and length of follow-up. Such differences in online features can make comparisons between the results from these interventions difficult. Some Web-based interventions have a social networking component [
The Chronic Disease Self-Management Program (CDSMP) was developed for people with chronic conditions and focuses on multiple health behaviors. Because the population is heterogeneous, there is no expectation that all participants will make similar behavior changes. This program has been shown to be effective across numerous health conditions (eg, diabetes, arthritis) and across multiple formats (face-to-face groups and online groups) [
The STC trial tested the effectiveness of a tailored Web-based intervention to encourage multiple health behavior changes in post-treatment adult cancer survivors. In order to maintain consistency with the CDSMP, in addition to being variables of importance for cancer survivors, diet, exercise, depression, and fatigue were chosen as our outcomes of interest. We hypothesized that participants in the STC treatment condition would show six-month improvements in psychosocial symptoms including fatigue, insomnia, and depression, and would also report eating significantly more servings per day of fruits and vegetables when compared with participants in the wait-list control condition. We also hypothesized that participants in STC would report significantly more minutes of physical activity per week compared to controls.
Eligibility requirements for the STC trial were intentionally broad and included age (18 years of age or older), completion of primary treatment at least four weeks prior, but not more than 5 years before joining the study, diagnosis with only one cancer and no recurrence, access to the Internet, and ability to read English.
Potential participants were recruited via a number of different online and mailed strategies [
We used a randomized controlled delayed-treatment design (NCT00962494). Participants were directed to the STC website and screened for eligibility and then completed an online consent approved by the University of Hawaii and Stanford Institutional Review Boards (IRB). Participants from TAMC completed a mailed consent form that was approved by the military IRB. Once consented, participants completed an online baseline questionnaire and were then randomized to treatment or control status. Randomization was conducted on a group-by-group basis. Once 40 to 50 participants had completed their baseline questionnaire, they were numbered in the order of completion and then randomized, using a random number table, half to treatment and half to wait-list control. All participants received a US $10.00 Amazon voucher for completing each questionnaire.
The STC intervention was a six-week online workshop that was adapted from CDSMP [
Each cohort (group) consisted of approximately 20-25 survivors, with a total of nine cohorts. Each session of the six-week course included approximately 30-35 webpages of didactic material (in the “Learning Center” of the STC
Each group had two facilitators who were cancer survivors. The facilitators went through intensive online training about both the content of the intervention materials as well as how to respond to users’ comments and goals. They were mentored by the principal investigators, who during the course of the intervention also read all posts and gave feedback and help to the facilitators as needed.
The STC intervention website contained numerous unique components. The most crucial components were the “Discussion Center”, “My Tools”, “Post Office”, and “Help”. The Discussion Center feature of the website is where social networking occurred and survivors were encouraged to provide feedback and encouragement to each other. This was accomplished in four threaded bulletin boards: action planning, problem solving, difficult emotions, and celebrations. As discussed above, these were seeded from the materials in the Learning Center. In addition, participants could post directly to any of the four bulletin boards at any time. The My Tools component of the program allowed participants to use tools (eg, exercise logs) to help continue to shape their behavior on an individual basis. They could also listen to relaxation exercises and find links to resources outside of this intervention. The Post Office component allowed participants to message each other individually, including emailing the facilitators. While facilitators, mentors, and principal investigators had access to all posted messages, they were not specifically monitored as a way to ensure some level of confidentiality. In the Help component, participants could contact one of the website or study administrators for assistance, look over a tutorial of the website, and read the informed consent.
Topics included in the Surviving and Thriving with Cancer Intervention.
Survey data were collected at two time points: baseline and six months later. Although it is typical to survey participants immediately after completion of the intervention, the goal in waiting was to see if any changes following the intervention were maintained. The delayed treatment control condition received no information or materials over this period.
Demographic and previous medical history items on the baseline questionnaire included: type and stage of cancer, date of diagnosis, course of treatment, co-morbidities, race/ethnicity, gender, marital status, and years of education. Measures were included to measure the following: fatigue, insomnia, exercise, fruit and vegetable intake, and depression. The Brief Fatigue Inventory (BFI) is a 15-item measure that was used to measure fatigue. It assesses both the severity of fatigue and the impact of fatigue on daily functioning during the last 24-hour period [
Baseline characteristics were reported as percentages for categorical variables and means and standard deviations for continuous variables. Differences between participants randomized to the control and intervention conditions were assessed using chi-square tests for categorical variables and
Roughly 14% (13.9%, 49/352) of participants who were randomized did not provide any data at 6 months, which did not differ by condition (11.4%, 20/176 and 16.5%, 29/176) for control and intervention, respectively). To address attrition, correlates of attrition were identified using a logistic model regressing status (participants with data at 6 months vs participants with no 6-month data) onto baseline characteristics (same as adjustment variables listed above), condition group, and the presence of long term health conditions [including anxiety (yes, no), arthritis (yes, no), asthma (yes, no), back pain (yes, no), COPD (yes, no), depression (yes, no), diabetes (yes, no), high blood pressure (yes, no), heart disease (yes, no), sleep disorder (yes, no), and other (yes, no )], with a stepwise selection method.
Analyses were conducted using SAS, version 9.2.
Recruitment strategies are discussed in detail elsewhere [
The majority of participants were Caucasian (87.2%, 307/352) and female (82.1%, 289/352), having a mean age of 51 years (SD 11.2) and mean education level of 16 years (SD 2.9); 47.4% (167/352) were diagnosed with breast cancer and another 12.8% (45/352) of participants were given either an ovarian or uterine cancer diagnosis. Baseline characteristics of participants in the control and intervention groups are shown in
CONSORT recruitment diagram.
In regard to general use of the site, the mean number of sessions ever attended (logged on at least once) was 5.3 (SD 1.28) with the range being 0-6, and 67.0% (203/303) of participants attended all six sessions, with 86.8% (263/303) attending 4 or more sessions. There were 8016 total posts by treatment participants for an average of 46 posts per participant over the six-week intervention period.
Results for changes in health behaviors/psychosocial outcomes are reported in
Baseline characteristics of study population.
Characteristic | Control group, |
Intervention group, |
|
|
Age, mean (SD) |
|
49.3 (11.0) | 52.4 (11.0) | .008 |
Female |
|
148 (84.1) | 141 (80.1) | .33 |
|
.84 | |||
|
Caucasian | 150 (85.2) | 157 (89.2) |
|
|
Asian | 9 (5.1) | 8 (4.6) |
|
|
African American | 4 (2.3) | 2 (1.1) |
|
|
American Indian/Alaskan Native | 3 (1.7) | 2 (1.1) |
|
|
Native Hawaiian/Pacific Islander | 3 (1.7) | 1 (0.6) |
|
|
Other | 7 (4.0) | 6 (3.4) |
|
Married |
|
122 (69.3) | 109 (61.9) | .14 |
Highest year education attained, mean (SD) | 16.5 (3.1) | 16.3 (2.8) | .62 | |
|
.43 | |||
|
Current | 4 (2.3) | 7 (4.0) |
|
|
Former | 57 (32.4) | 64 (36.4) |
|
|
Never | 115 (65.3) | 105 (59.7) |
|
|
.70 | |||
|
Breast | 84 (47.7) | 83 (47.2) |
|
|
Endometrium/Uterine/Ovarian | 23 (13.1) | 22 (12.5) |
|
|
Non-Hodgkins Lymphoma | 13 (7.4) | 7 (4.0) |
|
|
Colorectal | 11 (6.5) | 11 (6.5) |
|
|
Lung | 7 (4.0) | 8 (4.6) |
|
|
Thyroid | 6 (3.4) | 8 (4.6) |
|
|
Oral | 6 (3.4) | 5 (2.8) |
|
|
.96 | |||
|
In situ | 9 (5.1) | 7 (4.0) |
|
|
Stage 1 | 45 (25.6) | 45 (25.6) |
|
|
Stage 2 | 52 (29.6) | 55 (31.3) |
|
|
Stage 3 | 37 (21.0) | 41 (23.3) |
|
|
Stage 4 | 16 (9.1) | 13 (7.4) |
|
|
Unknown | 17 (9.7) | 15 (8.5) |
|
Number of years since cancer diagnosed, mean (SD) | 2.5 (1.3) | 2.4 (1.4) | .41 | |
Number of years since treatment completed, mean (SD) | 1.9 (1.2) | 1.7 (1.2) | .09 | |
|
||||
|
High blood pressure | 31 (17.6) | 34 (19.3) | .68 |
|
Depression | 32 (18.2) | 29 (16.5) | .67 |
|
Back pain | 25 (14.2) | 29 (16.5) | .55 |
|
Anxiety | 29 (16.5) | 23 (13.1) | .37 |
|
Arthritis | 18 (10.2) | 27 (15.3) | .15 |
|
Sleep disorder | 18 (10.2) | 12 (6.8) | .25 |
|
Asthma | 13 (7.4) | 13 (7.4) | 1.0 |
|
Diabetes | 9 (5.1) | 11 (6.3) | .65 |
|
Heart disease | 3 (1.7) | 8 (4.6) | .13 |
|
Emphysema, COPD, chronic bronchitis | 3 (1.7) | 5 (2.8) | .72 |
|
Other | 39 (22.2) | 39 (22.2) | 1.0 |
aSites also reported were oral cavity (n=11), soft tissue (n=11), testicular (n=10), kidney and renal (n=10), and other [n=26, including brain (n=5), prostate (n=4), eye (n=3)].
Mean (95% CI)a of outcome measures from baseline to 6 months by condition group.
Outcome measures | Control group, mean (95% CI) | Intervention group, mean (95% CI) |
|
Effect size |
||
Baseline |
Month 6 |
Baseline |
Month 6 |
|
|
|
Fatigue (BFId) | 40.8 (38.9-42.8) | 40.7 (38.7-42.8) | 39.0 (37.0-40.9) | 36.4 (34.2-38.5) | .56 | .17 |
Insomnia (WHIIRSe) | 9.6 (9.1-10.1) | 10.1 (9.6-10.7) | 9.6 (9.1-10.1) | 9.2 (8.7-9.8) | .03 | .20 |
Depression (PHQf) | 7.7 (7.0-8.3) | 7.1 (6.4-7.7) | 6.5 (5.9-7.1) | 6.1 (5.4-6.7) | .69 | .19 |
Fruit/vegetable intake, times/week | 22.7 (21.4-24.1) | 23.2 (21.7-24.7) | 24.3 (23.1-25.6) | 25.9 (24.6-27.3) | .24 | .21 |
Strenuous or moderate aerobic exercise, min/week | 86.0 (72.3-99.7) | 96.2 (79.9-112) | 106 (91.1-120) | 137 (119-155) | .45 | .29 |
Strenuous aerobic exercise, min/week | 29.0 (22.5-35.5) | 28.9 (21.8-36.0) | 32.0 (25.5-38.5) | 50.8 (40.7- 60.9) | .01 | .36 |
Moderate aerobic exercise, min/week | 37.0 (30.9-43.2) | 45.3 (37.5-53.0) | 49.0 (42.2-55.7) | 54.1 (46.5- 61.7) | .49 | .10 |
Mild aerobic exercise, min/week | 58.9 (51.5-66.2) | 65.0 (56.5-73.6) | 56.1 (48.9-63.3) | 74.1 (64.2-84.1) | .28 | .10 |
Stretching min/week | 25.9 (21.3-30.4) | 24.7 (20.0-29.5) | 30.5 (25.1-35.8) | 45.7 (38.1-53.4) | .01 | .12 |
aAdjusted for age, race, sex, marital status, smoking status, education, years since diagnosis, site of cancer diagnosis, cancer stage. For outcomes of fatigue, insomnia, depression, and fruit/vegetable intake, means and 95% CIs were computed on the predicted values from the model. For outcomes of physical activity, means and 95% CIs were computed on the back-transformed predicted values (Y4-1), where Y represented the predicted values from the model.
bTreatment effect was assessed by the
cCalculated by taking the differences of the means at 6 months predicted from the model, including adjustment factors, divided by the standard deviation for the difference computed from the within and between subject variance components.
dBFI: Brief Fatigue Inventory
eWHIIRS: Women’s Health Initiative Insomnia Rating Scale
fPHQ: Patient Health Questionnaire
Participants in the treatment condition had significant reductions in insomnia and engaged in more strenuous and stretching exercises than those in the control condition. There is an established link between sleep disturbance and inflammation, which can be related to both cancer and depression [
There are some limitations of the current study that should be noted. We measured health behaviors via self-report and there may have been over/underestimations of the dietary intake of fruits and vegetables, as well as physical activity, due to social desirability or recall bias. Due to significant economic, logistical, and noncompliance issues that can occur when nationwide online studies use objective measures for physical activity (eg, accelerometer) or telephone interviews for dietary intake (eg, 24-hour recall), this study was not able to use these types of assessments. That being said, self-reported health behaviors are commonly used for both Web-based and face-to-face trials and for several national health risk behavior surveys conducted by the NIH and CDC. Although the study focused on multiple outcomes, we did not adjust the significance level for multiple comparisons due to the exploratory nature of the analyses.
Our sample was well-educated and because more than half were recruited from various Internet sites, they had high levels of computer literacy and, thus, might be more familiar with posting their personal experiences on bulletin boards so others could comment on their success or lack thereof. Participants were not recruited or screened for entry based on specific inclusion or exclusion criteria for any specific health behavior (eg, low levels of physical activity or high levels of fatigue as criteria for eligibility) or for their inherent motivation/need to change all of the health behaviors addressed in the intervention. While this could have resulted in recruiting persons who were the most interested or more in need of changing a specific health behavior, in our study, it resulted in participants who were healthy, very well-adjusted, with little to no need (according to current recommendations) for significant changes in their health behaviors. At enrollment, their exercise and eating behaviors (in regard to intake of fruits and vegetables) were better than seen in national surveys, given that only 59% of average Americans eat the recommended 2.5 servings of vegetables per day and 42% eat the recommended 2.5 servings of fruits per day [
Another potential limitation is in regard to the lack of participants with a range of cancer types. As has been the case in the past and was the case with our study, the sample included a large percentage of female breast cancer survivors (47% of the sample), suggesting that the sample was more homogenous and perhaps the findings are less generalizable to people with other types of cancer. Future efforts for this to be more balanced are important and will be made in upcoming work. Although efforts were made to recruit people who would be more representative of cancer survivors as a whole in regards to gender, ethnicity, and cancer type, those efforts fell short in this study and continued efforts will be made.
Web-based interventions provide the ability to more fully understand the intervention aspects that are of most interest to cancer survivors, and with many of these interventions including social networking features, to understand the ways in which people interact and how that might be related to outcomes. People who have survived cancer clearly valued the social networking aspects of the STC site. There were multiple social networking components, such as webmail and numerous different discussion boards, so additional analyses could be conducted to understand what might be most important to the participants in terms of social networking. Understanding more about who people interacted with, as well as the content of those interactions, provides a foundation to more fully understand the ways in which people connect and how those connections matter in these sorts of interventions. Continued inclusion of social networking/online support in these types of interventions, as well as data collection on usage, is encouraged. Better understanding how the components included are used could also be a way to identify potent features of the intervention. It is important to note, though, that there could be synergistic effects that are difficult to capture technically when isolating components of interest. In conclusion, the Thriving and Surviving with Cancer intervention has been proven a relative success and additional efforts to understand what components are related to the most success could help further develop this, or any, Web-based intervention program.
CONSORT-EHEALTH checklist V1.6.2 [
Association of Cancer Online Resources
Brief Fatigue Inventory
Chronic Disease Self-Management Program
Patient Health Questionnaire
Surviving and Thriving with Cancer
Tripler Army Medical Center
Women’s Health Initiative Insomnia Rating Scale
There are many people to thank for their help and involvement with the study. We would first like to thank the participants for their willingness and interest in the study. We also thank Ross Yamato for his help with online recruitment and thank-you’s to participants. Thank you to Carolyn Gotay for securing the original funding for the project and to Ian Pagano for his help in some of the early statistical analyses, as well as Lynne Wilkens for her oversight of the analysis process and her helpful editing of the manuscript. We would also like to thank the Department of Defense and Stanford Cancer Center for funding this project (Department of Defense W81XWH-06-2-0042, Developmental Cancer Research Award from Stanford Cancer Center), in addition to all of the sites that helped with recruitment, including the facilitators of websites that posted our recruitment ad.
The views expressed in this manuscript are those of the authors and do not reflect the official policy or position of the Department of the Army, Department of Defense, or US Government.
KL published the book, Living a Healthy Life With Chronic Conditions, in 2006, which was given to the participants in this study as an intervention aid. KL receives royalties from this book but has no direct conflicts of interest with this study. All other authors have no conflicts of interest.